March 6, 2015

Reasons to love the eating disorder parent community

what it looks like when F.E.A.S.T. parents
accompany their friends down the other
side of the sand hill.
I have many personal, and practical, reasons to love the F.E.A.S.T. parent community. Let me give you a few:

1.     The fierce, dogged, unquenchable commitment that parents have to their kids. Is there any other relationship like it? I think people forget, because perhaps it seems so obvious, but it is still miraculous how committed and courageous and resourceful parents can be. We may not be able to fix everything but being in this parent world has offered me a view to parental love. Even in the face of extreme hardship, scary prognoses, lack of support, rejection by and even loss of a child, parents step up. If you met or knew the parents I know you would be staggered by the heroic love.

2.     The selfless, generally invisible nature of parent advocacy. Most of it is done by moms in their dining rooms or in the car between errands. Most of the names are unknown or barely known. They don't call attention to themselves. The parents who are making F.E.A.S.T. and other organizations run do so because they care about making sure other parents are not alone or without information. I know these parents and their deep sense of responsibility and caring.

3.    An emphasis on results. Parent advocacy isn't about making parents feel better. It's about making parents more effective at helping the patient and nurturing the family. The problem is "ED," not the person. Parents are on the side of their loved ones, and that means persistence toward the goal of recovery and a rich and fulfilling life.

4.     The F.E.A.S.T. community, in particular, believes in science. Science is a tool to understanding and analyzing and applying information. When parents put their support behind science they are saying that results matter, that understanding the illness is their responsibility, and that there is hope in reason.

5.     Strange fact: eating disorder parents are great to be with. Do we fight? Yes. Do we trip over one another? Yeah. But this one thing we share makes this wonderful bond that allows for both engagement and vulnerability. Before I fell down the ED rabbit hole I would not have imagined being friends with people on this basis but now I have to say that MOST of my best friends are fellow ED parents, and I'm so glad.

6.     Around the Dinner Table. The longest running conversation about eating disorders and parents: a thriving, fascinating, sometimes silly, completely unique forum.

Hannah, we're cheering!
7.    Hannah. Oh, Hannah, I love you. If you want to understand how special the F.E.A.S.T. community is you need to read Hannah's blog post for F.E.A.S.T. and celebrate her insights and recovery as we all do. A wise woman just as complex and inspiring and personally cared about as all of our kids are -- I am so grateful she let us play any role in getting her life back. Erm, and for her face when she sees adults tap dancing on tables in the night: priceless.

12 comments:

  1. Amen! And thank YOU for making us a community.

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  2. For several years, I was a member of the professional organization, Academy for Eating Disorders. I was also a member of the parent organization, F.E.A.S.T. I had pretty good insight into both communities. I became convinced that the community of parents was generally better-informed, more compassionate, more dedicated to the well-being of sufferers and, overall, more intelligent, open-minded, and well-educated than the community of professionals. I don't think it's a coincidence, therefore, that Family Based Treatment, a model in which parents are in charge of helping sufferers recover, has achieved better outcomes in clinical trials that any of the professional psychotherapies that have been tested. In short, professionals can learn more from parents than parents can learn from professionals.

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    1. FBT *is* a professional psychotherapy. Parents are in charge of PART of the process. When I laud the parents I am not dissing the professionals who courageously created, adopted, promoted, studied, and now innovate on the approach. It's not a zero sum game.

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    2. Clinical trials published during the past five years are showing that professional psychotherapy to treat adolescents with anorexia nervosa is having limited, if any, success. Rates of recovery tend to fall in the range of about 15% to 33%, with psychoanalysis on the low end, CBT around 33%, and psychodynamic psychotherapy and family systems therapy falling in the middle (both around 25%). Manualized FBT, on the other hand, is showing success in about 40-49% of cases.

      The FBT manual published by Lock and LeGrange encourages parents and families to find their own techniques for helping their teenager gain weight and restore normal patterns of eating, as distinguished from methods in which professionals dictate how that task should be attempted. The fact that the FBT trials are showing a relatively high rate of success indicates that many parents and families are perfectly able to bring about full recovery with relatively little intervention by professionals.

      Nobody has yet conducted a clinical trial testing manualized FBT against an alternative model in which parents and families go it alone without professional involvement. However, there are many anecdotes of families successfully doing that. Many of the families that go it alone are disillusioned with professional psychotherapy. Many of these parents and families were previously treated by professionals who failed to bring about recovery in their teenager.

      The objective of Family Based Treatment is to empower parents and families. Many parents and families already feel empowered, without the need for input from professional psychotherapists. Therefore, for those families, it is difficult to see the advantage of involving professional psychotherapists.

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    3. Man, Chris, why do you want to keep having this discussion? We know what you want to say. Everyone knows what I'm going to say. We've already done this.

      I think it is cruel and harmful to encourage parents to do it alone, and flatly inaccurate to describe FBT the way you are doing here. FBT does not mean parents are bringing about recovery on their own and you know it. The FBT professionals certainly don't characterize it that way, so why portray it this way except to feed misunderstanding about it? You are discrediting FBT while pretending to cite its success. You are, as far as I know, the only person to think that rejecting clinicians in the process is somehow congruent with FBT or with recovery. Better clinicians, better training, yes. This singular focus on "going it alone" isn't something I believe or endorse. I do the work I do because I wish I had NOT had to go it alone and I don't want any other parents to have to either!

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    4. I neither encourage nor discourage parents from going it alone. I believe it's a matter of individual parental choice.

      I object, however, to telling parents that using professionals is essential, which is the message disseminated by many well-meaning but misinformed organizations, including NEDA, F.E.A.S.T. and the Eating Disorders Coalition, among others. As we know, professional psychotherapy (even manualized FBT) has demonstrated fairly weak results, succeeding in fewer than half the cases. We also know that many parents succeed without using professionals. What those parents do is not, of course, manualized FBT. I have never claimed that it is. However, it is more similar to FBT than to any of the alternatives offered by professional psychotherapists.

      For many parents and families, going it alone will actually be superior to manualized FBT. Furthermore, if the sufferer is over 18 years old, very few professionals will agree to use manualized FBT. For that age group, there is no proven professional technique for treating anorexia nervosa, and therefore it is difficult to argue that professionals have a clear advantage over parents.


      There are actually many professionals who agree with me on this. In fact, I have met quite a few professionals who counsel parents to go it alone, depending on the circumstances, particularly if the only option in the area is a professional who uses discredited techniques such as psychoanalysis, psychodynamic therapy, or systemic family therapy.

      I think it is cruel and harmful to encourage parents to employ professionals, if the parents are capable of succeeding on their own.

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  3. I LOVE YOU. Just sayin'.

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  4. Laura, your presence is a gift to the world. Thank you for your drive and commitment.
    Together we will make change.

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  5. The most welcoming, resourceful, successful place to sit. What a wonderful thing you created, Laura Collins; I shall love you for it forever! The wonderful group of mods speaks volumes for the sense of purpose & respect that is your legacy.

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